Awareness Doesn’t Demand Suffering as Proof.

Knowing someone doesn't require watching them break

I share this often, that I hold no banners. I wear no colors. I hold no symbols. I sit firmly and wholly within having autism and being autistic. My intersections dictate that I will not live whole within the boundaries this community has decided to wall themselves off with. And so, I do not. I exist in the space outside of your identifiers, colors, symbols. I take up no banners and march for one side or the other.

I do my best work on the outside.

That’s where the nuance resides.

And for many the injection of lives not their own is considered an attack on their experiences and instead of giving community the respect it deserves, they pedestal individualism and market it as “majority prefers” or “you don’t understand.”

I am a mama.

I am woman.

I am Black.

I am autistic.

I am the mama to two teens who have autism.

I am a Black woman who is disabled, who lives in the south.

I am the mama to an adult whom the world would call “profound” because it cannot bring itself to envision the young man that exists beyond the behavior he exhibits that make them uncomfortable and bring them unease.

I am the mama who was diagnosed before children and spent time in “yesterday’s ABA.”

I am more than what I named.

All live within me, whole. Unbroken. All working together, against each other, around one another, but never apart from each other.

And this community will break itself into factions and demand that we do the same. That to belong, we would need to claim some part of ourselves.

You misunderstand community and, in your ignorance, you cast harm in every direction.

I have done nothing that exists outside of demand I be seen whole. That my children be seen whole. Ain’t nothing changed about my presence here in the six years or so that I have been screaming into digital spaces and hoping someone would lend me their ears.

I have taken hits from every side here.

Some so damn hard they almost knocked me out of this work.

Everything that comes after this will be the weight of years of love, exhaustion, and fierce, unrelenting advocacy. I have given myself permission to feel the anger. And the hurt. Because I shouldn’t have to prove the depth of my experience to anyone. And damn sure not to those who claim to be within the same fight.

I do not, have not, and will not show the worst moments of my child’s life to earn credibility here. I will not arm my son’s challenging times with his brother and twist them into some kind of weapon to be wielded against his brother and to publicly harm others. I am not going to abandon dignity to be taken seriously. I am not going to stand in the middle of a battlefield with parents on one side and autistic adults on the other and take shots while shielding my son within my arms.

I don’t half step shit.

That is how my autism operates. I fight with my whole heart. And I don’t just fight for my son. I might center my stories and that of my children’s, but I very much keep my ear to the pulse of what is going on within the community so that I know just how I want to frame anything I share, and what steps I am going to take.

I fight for families who do not know what to say just yet, who do not yet know the power of their voice. For disabled people who are dismissed and discarded because this world lacks imagination, compassion, and patience.

I don’t fight LESS because I don’t show you every scar. I fight HARDER because I protect my children in that way.

I don’t deny the difficulty in autism; I won’t let the world reduce him to it. But not everyone can hold that nuance. Not everyone will want to.

When I first started sharing, I began to realize that what I was doing was radical and it really shouldn’t have been. I am insisting that visibility should not come at the expense of the of a person’s humanity. I am not just advocating. This is a demonstration of love. The deep, profound love I have for my children.

I am tired. And I am angry.

I use none of the terms that many would categorize my son as.

I have spent his whole life trying to get people to see him beyond whatever label they will put on him. I have been fighting for them to care. To TRY. I have fought for accommodations, resources, dignity. I have shared our highs, and yes, I’ve shared our lows, but not in the way some expect or demand. I don't post videos of his hardest moments. I don't frame our life as tragedy for the sake of awareness.

I don’t care what anyone says, that ain’t awareness. You recording your child at that most vulnerable and putting it all over the internet and hash tagging it “awareness” does not make it awareness. You writing a post about all the ways in which your life is made horrible and hard by autism is not awareness. You having your other children write about how hard their sibling has made life for everyone in the house is not awareness.

THAT AIN’T AWARENESS.

It is EXPOSURE.

You just put on a trauma performance. Turned pain into content.

You ain’t educating.

Awareness is not measured by how much pain you display.

Y’all taking a count of how many tears you can collect.

What you win if your bucket full?

Awareness isn’t about pity, or shock, or “look how hard this is.”

What you think people doing when they see what you’re doing?

It ain’t moving them to act in the way you want them to. They might feel bad for you and scroll on. You ain’t give them nothing to act on. You went on and on about your adult child in diapers and poop smearing, banging his head into the wall, and they don’t know what to do with that. You railed into lower support needs autistic adults and spent four minutes comparing your child’s life with theirs and the people watching/reading your content do not know what to do with that.

You gave them no action points.

No direction.

Nothing.

No, not nothing, what you did was scared the fark out of them. And they will take that information, those feelings that your content brought up and they will use it to inform their interactions with my child. They will use them to continue to misunderstand and label and support measures that will not do anything for my child and others like him.

Awareness is rooted in truth, dignity, and action.

It will acknowledge struggle, but it will not reduce a whole person to only struggle. Awareness will ask others to look deeper, to learn, to change...it will not make others feel bad for a second and move on.

And in this judgmental society, a lot of them don’t even feel bad, they feel as though you aren’t a good parent. You just need to “whoop his ass” or “lock him up somewhere...”

Awareness will tell others to see them. Support them. Stand with them. Stand with us.

True awareness doesn’t demand a child’s suffering as proof.

You are performing and for what. Not awareness. And you are costing my children far more than you could ever teach the world with what you are doing.

So, you will feel as though I am romanticizing autism because you are barely surviving.

Tell me that I don’t understand what you are going through.

But I do.

I have watched this community open its conversations on ABA, on identity, on intersectionality, because of the way I advocate. I have pushed conversations forward. And even when I doubt my impact, every single day I am reminded by someone or some organization that I have changed the way they think. I have stood in the gap between parents and autistic adults, and I have taken hit after hit from both sides.

I fight for them just as I fight for mine.
And still, I get accused of not knowing struggle, because I protect my son’s dignity.

But here's what they don’t see:

My son has been excluded from every space, even disability spaces. He’s been the most disabled person in the room every single time. He’s had therapists walk out. Schools give up. People misunderstand him so deeply he’s been harmed, abused, almost SHOT. We’ve lived in cities large and small, and he’s always been alone in his experience.

And we do this with no breaks. No respite. No village. Just us. Every day. Every night.

Still, I fight.

For my boys.

For yours even when you make this work exponentially more difficult.

I just ain’t gonna tell the world that every part of my son that is challenging is all that he is. I won’t tell the world that his struggles are what is gutting my life. That his very existence is a burden.

Don’t mistake my protection for privilege. Chances are, you still carry far more than we do. Don’t mistake my language as denial of his struggles either.

Don’t mistake my love for a lack of understanding.

I understand all too well.

I’m not here because it’s easy. I’m still here because it’s necessary.

Because every time I think of quitting, I remember who’s watching. Who’s listening. Who’s learning how to exist in a world that says they shouldn’t.

My sons are watching.

And so are your children.

And one day, when the noise dies down, and the sides dissolve, and the battle lines blur… my words will remain. My fight will still be echoing in someone else’s bones. And maybe then, we’ll understand that the path forward was never about choosing sides, it was about choosing people. It was about love.

Love ain't a performance.

It ain’t a spectacle.

It’s the quiet work. The enduring work.

And I’m still doing it.

Cause what’s gonna last longer, you creating a struggle narrative that devours your child whole or words that would tell the world that yes, there are struggles, but he is so much more, and you chose to see him as more?

You chose to fight for his dignity.

You chose to build something that would outlive the pain.

I’m still choosing that. Every day.

Even when it costs me.

Even when it’s lonely.

Even when your silence is louder than your support.

Because my love is not conditional.
My advocacy is not performative.
And my hope for my children, and for yours is too sacred to abandon.

I will not be moved.

You gonna be seeing me for a long time, Ma.

Brace yourself

…or whatever.